This poem is about the use of medical terms when referring to symptoms of the disease.

Shortly after my husband was diagnosed, we were sent a copy of a letter to his doctor which was written by his Neurologist. It contained the word ‘anhedonia’. I had to look the word up and it made sad reading as it brought it home to me that, whilst my husband was still showing signs of recognising ‘pleasure’, it could be that he would lose even that most basic form of human awareness.

Because of the complexity of the disease, the chances are that many will come across words used in the description of symptoms that are not easily recognised. The majority of the terms given below were used in connection with my husband. I personally found it useful to look into the meanings of the words to try helping me get a handle on where those making assumptions about my husband were coming from.

“It’s all Greek to me!” Is the phrase in my head,
As the words on the paper begin to be read.
Is it Greek, is it Latin? I haven’t a clue,
But it sounds quite impressive how they describe you.

So I turn on computer and search on a word;
Oh why is the spelling of these so absurd?
And then one by one, as their meanings unfold,
It’s no wonder they use them, the sadness they hold.

‘Aspiration’, tells me though happy you’re fed,
The nutrition is aiming for your lungs instead.
‘Dysphagia’, tells me the food that I give,
Is making you choke more than helping you live.

‘Dysarthria’, tells me your mouth will not say,
What you want me to do; do you want it this way?
‘Bruxism’, tells me your teeth will grind more,
And whilst you do not notice, my nerves can’t ignore.

‘Ataxia’, tells me your order is altered,
Explaining the speech and the steps, which are faltered.
‘Dystonia’, tells I straighten in vain,
The stiff limbs contorting, contracting again.

‘Alexithymia’, tells me your feelings are dead,
Or you cannot express them as words can’t be said.
‘Anhedonia’, tells me you cannot feel pleasure,
Devoid of the feelings you once used to treasure.

‘Myoclonus’, tells me the thrashing in bed,
And the knee in my back, and the punch in the head;
It’s not that you mean it; it’s not aimed at me,
There’s a name for this symptom within your HD.

Please do not think the symptoms above apply to everyone with HD. Or that they applied to Steve. I thought I would add at this stage, Steve never did develop Anhedonia.

In Xmas 2010, a few weeks before he died in Jan 2011, Steve was still showing he found pleasure in the simple things in life. I naughtily gave him a small glass of port after his Xmas dinner in the hotel we were staying at. Sure, I had to use foam swabs which was a bit like giving him port lollipops but it was easy to tell he was finding a guilty pleasure in the taste of the port As for watching him sitting more upright than I had seen him in months watching the new Shrek video I had bought him and watching his face light up. Let's just say if I could define my own sense of sheer pleasure it was captured in times like that even so late on in terms of Steve's HD.

By contrast, my mum died of cancer a few years earlier. The day before she died she was pleading for a cup of tea and a ciggie. I was not allowed to give her a cuppa as they had given her a tracheotomy and there was no way she could be moved from the machines to sneak her outside for a crafty smoke.

She was then pleading with me to switch off the machines and let her die. No one would ever say medically my mum could have a thing called Anhedonia like they seem to assume those with HD may get. Trust me though, Steve experienced more pleasurable moments in those last few months than my mum did bless her.

I gave away two books this week at work. One to a lady who I often see on the Panels (I am a Mental Health Tribunal Clerk). The other to a community Psychiatric Doctor. The Doctor happened to mention to me she has a friend who has a husband with HD. In general I am getting good feedback from those who have read it/browsed through it. No one has said they are angry yet at how I criticise the system in so many places

__________________
I tried.

Last edited by Trish; 14-01-18 at 01:11 PM.
Reason: Added the bit in green

Thinking of you as another Angelversary comes to a close and your happy memories that give comfort and hope.

Best wishes
Crystal

Thank you Crystal.

I mention the other book in my blog ( THE MISSING PEACE). I'm sure Ian won't mind if I insert here a portion of my entry:

Quote:

Time helps to erode the sharpness of the pain of grief.
Initially it’s like walking on a beach of sharp shards of glass barefoot.
As time goes on, the tide of tears and time washes over the glass strewn beach.
It smooths out the sharpness making it feel more like walking on pebbles. Still a bit painful underfoot but bearable.
The burning sun of memories can sometimes make the pebbles too hot and make you want to step off quickly or the powerful waves of emotion can make you too scared that you will get knocked off your feet.
With time the pebbles change to walking on a calm and sandy beach.
The sensation underfoot becomes more comfortable.
The beach is more a place where you want to visit to relax to watch the grains of grief gently running through your fingers; mixed with tears to build sandcastles of memories.
The sun on your face; the castles in the sun; and the lap of gentle waves of emotion bringing a kind of inner peace. Everyone knows, there’s nothing more lovely than sitting in a peaceful place and looking up to the sky towards
what could be a form of Heaven, whatever that is, wondering who is up there sharing the moment and smiling back at you.

I mention the other book in my blog ( THE MISSING PEACE). I'm sure Ian won't mind if I insert here a portion of my entry:

My beach of pebbles is now getting more sand like.

Thank-you for posting the above Trish.......those words were there waiting for me to read this morning, just a couple of hours after saying farewell to someone very special to me....family with no HD connection as such (not strictly true?), but a part of my life now to be recalled in happy memories forever. Coincidence.... That word is rapidly disappearing from our vocabulary!
A missing (piece).....a final link in the chain gone....and now time for me to purchase a new book to read. Thank-you!

Thank-you for posting the above Trish.......those words were there waiting for me to read this morning, just a couple of hours after saying farewell to someone very special to me....family with no HD connection as such (not strictly true?), but a part of my life now to be recalled in happy memories forever. Coincidence.... That word is rapidly disappearing from our vocabulary!
A missing (piece).....a final link in the chain gone....and now time for me to purchase a new book to read. Thank-you!

Sorry to hear you have just lost someone special Crystal. I hope you can find some solace in the book but right now that you are able to get time for yourself and to yourself to grieve. Sending (((HUGS)))

Thank you to anyone who has already procured a copy of my book - Curse in Verse and Much More Worse, be it by way of HDA SHOP or AMAZON. I made the book available also on Kindle Unlimited (KU) where KU subscribers can read it for free.

For anyone interested in sample poems from the book there are numerous extracts throughout this Thread.

Alternatively, I have been lucky enough to get the help of a few actors to read some of the poems. Videos below:

Thank you to anyone who has already procured a copy of my book - Curse in Verse and Much More Worse, be it by way of HDA SHOP or AMAZON. I made the book available also on Kindle Unlimited (KU) where KU subscribers can read it for free.

For anyone interested in sample poems from the book there are numerous extracts throughout this Thread.

Alternatively, I have been lucky enough to get the help of a few actors to read some of the poems. Videos below: